In loving memory of Esme Raine Burnell

Hello this is Esme our beautiful baby angel. 
Esme was born at 37.6 weeks, bringing so much love into our lives. 
Sadly Esme was admitted to Birmingham Children's Hospital straight after birth as she had obstructed airways and she needed further testing. 
Esme was fitted with a tracheostomy at only 6 days, weighing 4.4lbs. This was a decision that we have never looked back on as it gave us more time with our baby girl. 
Days went by and our world shattered into a million peaces, our hearts received pain that we have never felt before. Esme had Trisomy 18 (Edwards syndrome) diagnosed at just 2 weeks old. 
This not only came as a shock but we knew then we had to be an advocate for her, ensuring she had the best care, love and support from everyone in the hospital. 
As soon as we had received the diagnosis we would spend every hour possible with Esme as she was in PICU. Every little time we had free, we would research about this diagnosis, what conditions it came with and how we could give Esme the best quality of life. 
We were not aware about Trisomy 18 and reading family stories it taught us  that our little ones do survive for many years and are compatible with life. 
No one should ever say any child is not compatible with life or base their opinions on statistics. 
We were so lucky to have a team who treat Esme as Esme and not Trisomy 18. We are so grateful for everything that was done for her. 
At 3 months old Esme unfortunately had tested positive for COVID, and she was put back on a ventilator and had to be isolated. Our little girl fought against it and was on road to recovery.

Sadly Esmes heart defect was worsening and because of her diagnosis of Trisomy 18 there are no hospitals in the UK that would operate on her, which is really heartbreaking as there is not enough evidence out there to show how our little warriors recover from open heart surgery. 

On 18th March 2021, we brought Esme home, where she belongs. She was so happy to be there, no monitoring, no screen watching, just looking at our beautiful baby girl smiling. 
Bringing her home was all we ever wanted, sadly it was not how we were planning to bring her home but she got home. She had time in her moses basket, cuddles on the sofa, having her nappy changed on her changing mat and loving the Christmas tree lights. 

Esme our beautiful baby girl gained her angel wings on 19th March, she was too precious for this world, she gave it her all, fought all the way and we are so proud to call her our daughter. 

We are now raising money for SOFT UK, a charity close to Esmes heart, for families like us, who are raising and coming to terms with a loss of their child. One day in the future, we do hope there is enough research for children with Trisomy as surgery should be offered to give them the best life possible. 

Thank you for taking time to donate, we really appreciate all your help and support. 

Our love
Chelsea, Anthony & Esme xx


Do you want to join me in making a difference? I'm raising money in aid of SOFT UK and every donation will help. Thank you in advance for your contribution to this cause that means so much to me.

More information about SOFT UK: SOFT UK is dedicated to: Providing the most relevant and up to date information about Trisomy